Kirsten Walters has type of Rheumatoid Arthritis that I have is called Systemic Onset JRA, or Still's Disease.
It seems like every time I turn around, I hear this damn phrase: “You’re too young to have arthritis.” Despite hearing it for almost eighteen years, it is hard to know how to react. I’m always torn on what to say initially.
My inner monologue kicks in before the whole sentence even comes out. Part of me screams to correct them, informing them that ‘arthritis’ is so much more than the osteoarthritis that their grandma had. Part of me agrees with them and wants to cry. A small part of me wants to kick them in the face. But another part of me tells it like it is, how I’ve been battling this disease since kindergarten and how much it has shaped and changed my life.
In the end, I respectfully let them finish and politely combine all my inner rants into a cohesive and polite as possible sentence of education.
As I’m sure many of you readers know by now, arthritis is a blanket term that encompasses a ton of diseases, from Lyme disease to lupus to juvenile arthritis. One of the diseases, Still’s disease, can occur in adults (Adult Onset Still’s Disease) but most often occurs in children. In that case, it is also called systemic (onset) juvenile rheumatoid/idiopathic arthritis.
Still’s disease, like so many of others in the arthritis group, can be very hard to diagnose. Many of the symptoms can be attributed to other things – the rash, the horribly high fevers, blood work, the joint pain and fatigue.
When I fell ill in November of 1993, no one really knew what was happening. I had just had strep throat so there was a worry that it hadn’t gone away yet. Then I probably had allergies to something – laundry soap, body soap, peanut butter. The guessing game went on, through several diseases. The final straw was when leukemia came up. At this point, my mom knew enough about medicine to know it didn’t fit the symptoms. So she hit the books. If she hadn’t, I have no reservations in saying that in the physical state I was in, I probably would have died getting that radiation and chemo they were trying to push on us. I’m really lucky that she is as devoted as she is to me.
It took a couple of months of poring through dozens and dozens of medical textbooks and meticulously documenting my every symptom to find the real diagnosis. She brought all of her evidence to my team of doctors for a positive diagnosis.
Some children experience one flare up of juvenile arthritis and that’s it. They simply recover. I have another friend, coincidentally also named Kirsten, who was lucky and her JA cleared up. The rest of us, though, face an entire lifetime of doctors’ visits, labs, x-rays, chemotherapy drugs, experimental medications, and unfortunately a lot of pain.
There is no miracle drug, no cure, and no one thing that can help children the most. Many drugs can help alone, while for others a combination of drugs is necessary. Finding the right drugs is a huge experiment in and of itself. Often, children face a number of surgeries, a lot of physical therapy, and a large amount of time spent on the corticosteroid prednisone to control swelling. Prednisone, along with these other drugs, can be dangerous. Many of the side effects are hard to handle, destroying your immune system and making you far more vulnerable to a number of illnesses – including cancer. JA itself makes you vulnerable to possibly debilitating secondary conditions, like uveitis, secondary Sjorgen’s syndrome, and other autoimmune diseases.
I have gone through a number of drugs in the past two years. Like many people, I started on hydroxychloroquine, an anti-malarial drug that does have benefits for many people. Unfortunately, even when paired with the chemo drug methotrexate, it did nothing for me. Methotrexate works for many also, but again not for me. I’m now exploring what other medications to pair with my current biologic. I also have had dealt with some of the secondary conditions, most specifically uveitis. It is very painful, and can lead to blindness.
To be honest, until the last couple of years, I really didn’t know all of the side effects possible with my illness. As I said earlier, the medications can have pretty bad side effects. There are a small number of people who die every year on these medications, from bad reactions, infections, or as a result of complications with the meds. However, without the right treatment, complications from these diseases can also cause fatalities. Carla Jones, author of Death by Rheumatoid Arthritis, found that out the hard way. Unfortunately, her mother died of complications caused by her RA and its effects on her spine. While these cases are relatively rare, it’s important to keep an eye on reactions and to not give up when things don’t feel right.
I’m lucky to not have experienced too many complications from my illness, although I currently have something going on with my spine. To be honest, I’m really scared and worried about it. But it could be a number of things, and I’ll find out soon what it is.
One of the most difficult things for children affected with these diseases has to do with their emotional well-being. Any kid going through puberty or teasing is going to have a hard time handling it. Throw JA on top of that, and it can be a recipe for disaster. Kids feel alienated because they can’t be as physically active in many cases. They get teased because they limp or are absent a lot or need assistive devices like canes, splints, and wheelchairs. In elementary school, it can be easier to handle with education for the entire school or that child’s specific class and faculty s/he interacts with. It’s harder to control these issues once a kid hits middle and high school. Add to all of that frustration at your body’s shortcomings, pain, and just being tired of being sick – it can be a really dangerous mix.
I dealt with a lot of teasing and bullying. The worst of it was during PE classes in eighth grade. I didn’t have too many friends, and having to sit out a lot of activities didn’t help. The bullying continued into high school, based on my weight. It isn’t always easy to work out when you can’t move very well. But teenagers don’t see that. In keeping with being honest, I struggle with self-esteem issues and often with depression. Chronic pain has a way of making even the happiest seeming person suddenly seem not so happy. On a number of occasions, self-destructive and suicidal thoughts pop up. The most important thing to remember is that you are not alone. Reach out to others with your condition. When I finally did, a lot of my feelings didn’t seem so weird. I learned a lot about myself and about others too.
So, you see, it’s not just ‘arthritis.’ It’s so much more. And once more people understand that, the better the lives of these kids can be.